Dignity

I'm all for dignity and a forward look at the future. The present has been cruddy.

nothing wrong with asking for what you want -

complaining because you don't get what you want ? that's a whole nother issue ;-)

I think most folks on here are very diginified, and most likely in their real world they try to continue living through this illness by moving on after an accident, or going to work feeling crummy.

That's why we have HW, to come and vent and talk about most things you cannot talk to others about -- and if you did...many wouldn't understand whereas everyone here totally gets it.

I also think the research adds so much to the forum. I think of all the things I have learned on here from so many. So, this forum is a mix of good stuff; venting, victories, and knowledge.

"I choose to keep my bad days and the results thereof private while trying to push our disease forward into the better funded research categories where we might have a chance at getting the medical establishment to take us seriously."

This is absolutely backwards thinking. If you want more research and awareness for a disease, then you shouldn't hide its effects. How would you convince someone that UC research needs funding without sharing the so-called "undignified" facts you insist on hiding? "I have abdominal pain and I lose weight"? "I don't like to leave the house for reasons I don't want to share with you"? Telling the unvarnished truth is the best way to spread awareness.

I don't believe that dignity is defined by conforming to some rigid social standard of what you may or may not talk about. Dignity comes from within.

I've sshhitttied my pants more than I can count -

even so, I still hold my butt high !

Hard to have dignity when you can't even drive your kids to
school without crapping your pants. People need to vent. These forums great resources to do that. I wish I found these forums before I had my surgery when I really needed to vent and look for support.

Totally agree on the support that we all get here and I certainly wasn't being critical. Let me clarify:
I think that maintaining our dignity is crucial regardless of how embarrassing our UC can become. I just don't want friends and family to think, "oh he's got that crapping the pants disease". Like with cancer, it's horrible what people go through with chemo, but choose to focus on the recovery part, if they are lucky…
I believe having grace and dignity are just as important as taking your meds, etc.
This thread was not meant to be critical, just pointing out another perspective.

Hey Q, can you back off from attack mode for just a few seconds, it IS the holidays after all...

I think an advocacy web site is an excellent idea, although I'm not sure how many there already are. The owner/administrator of this site has designated it as a peer support site, and if you're thinking of trying to make changes it would be best to work with him.

Sometimes it's easy to forget that not all sites are user-managed and directed.

The only time I lost my dignity with UC were those few occasions where I lost control of my bowels. Other than that, I had my dignity all the way through; I just had no quality of life and got very depressed.

Sue

I didn't interpret BeatUC's post as an instruction not to vent about the embarrassing, humiliating side of having IBD. Instead, I saw in it something rather sweet and humble: a reminder that we still have dignity as people, no matter what.

This is a subject close to my own heart. I had ileostomy surgery getting on for 10 months ago. I had thought beforehand that it was not possible for me to be fazed by anything poo-related: after 13 years of Crohn's colitis, how could anything possibly bother me on that front anymore? Well, I was wrong. I was shocked (not an exaggeration) to find how humiliated and disgusted I felt by having an incontinent, pulsating, mucus-covered object on my stomach. I went through a period where I found it quite hard to change bags, because I knew I would have to look at the stoma and I didn't want to see it. I especially didn't want to see or feel poo coming out of it.

Well, the happy-ish ending is that I am finally coming to accept the stoma as a part of me. I will probably never love it: it's not an intrinsically loveable object, to be honest. But it has given me my life back - not an easy life, for various reasons, but at least a life which is no longer dominated by pain and illness. Hopefully, one day I will feel truly blessed for having a second chance.

Anyway, I guess my point is I was wrong to let the stoma make me feel like a disgusting person. I let it rob me of my dignity: maybe after years of dealing with Crohn's, it was the straw which broke the donkey's back. I'm not sure. But one thing I am sure about and that there is nothing under the sun which can remove our intrinsic dignity as human beings: and anybody who tries to just shows their own lack of humanity. Yeah, I'm digressing a bit with that final sentence: I just mean to say I don't care how many times a day you crap your pants: you would still be exactly the same people to me if you didn't have UC or whatever.

*hits submit, before I start sobbing and tearfully thanking everyone in sight*

Dignity and self-esteem may be tarnished by colitis and its impact on our daily lives, and although we must communicate the stressfulness of this condition, reassurance is of the utmost importance.

I agree that we have to vent at times, but there is a point beyond which the horrific incidents we have experienced become more powerful than they should. I understand that the nature of our condition is unbearable at times, but I choose not to centralize and overemphasize its negative aspects. Instrad, I choose to disempower it and deter its attempt to overpower my wellbeing.

I have ulcerative colitis, ulcerative colitis does not have me.

This is quite a tricky disease, because its symptoms overstep social taboos. I have a more comical approach to my situation and actively avoid the vicious stress cycle of taking it seriously at all times. Yes, I have had numerous accidents, and it is hard to explain why you were late to lecture and why you keep leaving competitive practices and matches. Nonetheless, everybody poops and I do not hold back from being open with my professors, coaches, and teammates.

I try to enjoy the trips that I take when my health is somewhat stable, even though I spend most of the time studying where the washrooms are and what areas could be used in case of serious emergencies. Adult diapers would work wonders for my calmness, but they would be counterintuitive at the end of the day.

The anxiety is hard to deal with, and you must literally wage war against colitis both mentally and physically in order to get through your day. Fine by me, I won't go down without a fight, and I won't wake up without a smile.